Meeting the Challenges of Long-Distance Caregiving

by Lazelle E. Benefield, PhD, RN, FAAN

“My mother lives 400 miles away,
and I miss opportunities to visit with
her. This means I also miss opportunities
to accompany her to doctors’ visits
and be with her as she receives chemotherapy
treatment.”

Family and friends who live a distance
from a loved one with cancer often
find it challenging to provide the right
mix of care, support, and guidance. With
families increasingly being separated
by geographic distance, more and more
long-distance family members are becoming
“caregivers.” The challenge they
face is identifying exactly how to provide
support and assistance without the benefit
of being physically present. Managing
priorities calmly and efficiently across
geographic distance can be taxing.

To meet the challenges of long-distance
caregiving, acknowledge what
we already know – being a friend or
family member of someone with cancer
involves YOU in an important social
role. Your chief responsibility is to offer
comfort and to stay in touch. If you are
helping to manage or monitor healthcare
decisions, finances, and/or social support
systems, you have an additional
role as caregiver-at-a-distance.

Consider the following tips to help
you stay in the loop: ♦ Gather resources. Order So Far Away:
Twenty Questions for Long-Distance
Caregivers, published by the National
Institute on Aging, or download it free
at www.nia.nih.gov/HealthInformation/Publications/LongDistanceCaregiving.
Organized in a question-and-answer
format, the booklet provides resources
and ideas specifically related to caregiving
from a distance.

Consider using Web-based community calendars, such
as LotsaHelpingHands.com, to organize support for the
person with cancer.

♦ Talk with friends who have similar
experiences of caregiving from a distance.
Ask for tips on how to stay
in touch and how to monitor care and
treatment plans while not being physically
present.

♦ Talk with your loved one, preferably
in person, to determine how he or she
wants you to assist. This is an especially
difficult conversation if the person wants
no help, and even more challenging
if he or she is unaware that you are
currently assisting in less overt ways.
Honor your loved one’s wishes, and
balance your desire to know medical
details with the social reality of the situation.
Expect weighty conversations to
occur over several visits or phone calls.

Your loved one’s wishes may evolve
as time goes by. Decide whether you
are able to do what is requested. Being
a voice of comfort over the phone is
one thing; investigating local services
and coordinating among other family
members and friends is quite another.
Consider how the larger network of
support is, or should be, involved.

♦ As appropriate, and with the consent
of your loved one, develop a working
relationship with his or her healthcare
provider. Again, as appropriate, ask
your loved one to include you among
those who can receive medical information
from the healthcare provider.
Schedule an in-person, telephone, or
online meeting with the healthcare provider,
you, and your loved one to review
and update his or her health status.

♦ Consider using Web-based group calendars,
such as LotsaHelpingHands.com,
to organize support for the person with
cancer. These free, private group calendars
provide a method to coordinate
activities like driving to appointments,
shopping, or meal preparation among
family, friends, and other volunteers.
This goes a long way toward keeping
everyone updated without having to
repeat conversations and can be useful
to people with cancer who want to post
updates in their own words.

♦ Gather all relevant contacts, including
telephone numbers and e-mail addresses,
in a format you can carry with you. Enter
this into your mobile phone, add it to
your e-mail contacts list, or write it down
in a small notebook so that the information
is easily accessible.

♦ Continue to value the importance of
communication between you and your
loved one with cancer. Keep in touch
regularly by phone, mail, online communication
tools (Skype, IM, Facebook,
or another virtual connection), or in-person
visits. Within the context of
time available, commit genuine attention
to the moment and the connection.

Find ways to bridge the distance.
Don’t fret about not being able to always
be there; you can still offer invaluable
support. A long-distance caregiver sums
it up: “My sister lives locally and visits
Mom often. However, I live far away
and contribute by mailing Mom a postcard
each day,
describing the
routine activities
of daily life.
I also call Mom
several times a
week, and in the
last year, have
taken to visiting
every six weeks.
Though in the
overall scheme
of all these actions, my sister reports that
Mom’s postcard arriving by mail is the
high point in her day.”

♦ ♦ ♦ ♦ ♦

Dr. Lazelle Benefield is
professor and Parry Endowed Chair in
Gerontological Nursing and director of the
Reynolds Center of Geriatric Nursing Excellence
at the University of Oklahoma Health
Sciences Center in Oklahoma City, OK.

This article was originally published in Coping® with Cancer magazine,
November/December
2009.